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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. I imagine

    specialty labs-where are they?

    Very interesting that Focus is owned by Quest! My local Quest lab won't do it but maybe one of the hospitals in nearby towns will. Thanks.
  2. I imagine

    specialty labs-where are they?

    Focus Labs (Stanford University) doesn't send kits, just directions. CFS/virus tests are one of their specialties evidently. My doctor gave me the requisition to have the tests done there but I can't get the local labs to send it without a kit. Is Health Diagnostics a good lab Sushi? I can go...
  3. I imagine

    specialty labs-where are they?

    Everyone says to be sure to send blood for virus testing to a qualified lab to insure that your results are accurately read but how does one find these labs? My doctor gave me a requisition for Focus Labs in CA. but I can't find a local lab to help me get the blood there. Does anyone know of...
  4. I imagine

    Craniosacral Therapy

    Thanks Moblet for this valuable information. They actually called me today to see why I hadn't made another appt.
  5. I imagine

    Craniosacral Therapy

    I recently went to see a cranial osteopath and I was excited about getting help from her. She suggested seeing her twice a week for a while at $250 a visit!!!! No way I could do that. Does that sound high to you Moblet? I was thinking about cranial sacral therapy as well but I'm guessing it's...
  6. I imagine

    SPECT Scan?

    Hi Tristen, I'm in the process of getting more blood tests. I'll wait for the results and take it from there. How did you treat your infections? All I've done so far is take supplements and rest. The vitamin IV drips didn't seem to help and were outrageously expensive. It's good to hear that...
  7. I imagine

    SPECT Scan?

    Helios-How frustrating! This seems to be the common story. Spend lots of money and get nowhere. Has your condition improved over the last 6 years?
  8. I imagine

    SPECT Scan?

    Hi Merylg, Have you had any of these procedures done? They sound quite expensive but it's interesting to know that things can be done. It's also interesting that your Dr. ordered a different MRI as opposed to SPECT. I had thought that the SPECT showed more. Thanks so much for the information.
  9. I imagine

    SPECT Scan?

    Thanks Mon ame, I read through the information and yes, if a SPECT scan shows that we have abnormal blood flow to parts of our brain, can anything be done about it? I guess that's the million dollar question.
  10. I imagine

    SPECT Scan?

    I would like to get a SPECT scan since I know something is wrong with my brain. It feels like much more than brain fog. My Dr. said it's a waste of money but I really feel like it would help me to know if they find anything. Have any of you gotten pertinent info or help from having a SPECT scan...
  11. I imagine

    Oreganol

    Oh wow, I'll hope for that!
  12. I imagine

    Oreganol

    OK, thanks all. my sister swears by it and has had some shipped to me but feels it should be taken for at least 3 or 4 mos before getting good benefit. I guess I'll give it a try.
  13. I imagine

    Oreganol

    Has anyone heard of using Oreganol as a natural anti-viral and getting positive results from it?
  14. I imagine

    Important to test for XMRV?

    Thanks everyone. This has all been very helpful. I think I'll put the money towards some other tests for now.
  15. I imagine

    Important to test for XMRV?

    I am having some further tests done. I tested positive for Epstein Barr. Is it important to be tested for XMRV? Would treatment be the same regardless of whether or not I test positive for XMRV? I'm trying to choose the most important tests since money is an issue. Thanks for any help with the...
  16. I imagine

    End of the Line

    Hang in there Jimels. You musn't give up. I'm in a very tricky situation also and God knows I want to just give up often but every now and then something good happens and gives me hope. Let us give you hope. Get a disability lawyer! They don't get paid unless they get disability for you. While...
  17. I imagine

    Suffering and spirituality

    Hi Nielk. I've been thinking a lot about my spirituality lately so I'm going to answer the above questions. I don't think suffering has made me a more spiritual person. If anything I find myself losing faith because I don't understand how people could be meant to suffer this way for so long. I...
  18. I imagine

    Dr. Byron Hyde Skype consult?

    I don't live close to any of the known CFS doctors and have limited money. I'm thinking about doing the Skype consult with Byron Hyde. Have any of you done the consult or recommend it (him)? It's $400 for 2 hrs. so I don't want to make a hasty decision.
  19. I imagine

    ME/CFS Doctor List

    Does anyone know of a capable doctor in Arizona?